An Effort to Raise Awareness of Sepsis, Led by Families Touched by It

One evening in late spring, Ken Fitzgerald, a US Airways pilot, was on a layover in a hotel near Kennedy International Airport when people he had been in touch with by email and phone, but whom he had never met, called him. Would he like to join them for a burger?

At a bar called Molly Blooms in Sunnyside, Queens, Mr. Fitzgerald told his hosts, Ciaran and Orlaith Staunton, and their daughter, Kathleen, about his son Tommy: At age 9, he had the moxie to wear a top hat and a skinny neck tie to a talent show, pulling off a slick dance routine as he sang “Route 66.” At age 12, he ran a 5:40 mile. A few weeks after that, he raced around the bases on those same speedy legs for an inside-the-park home run at the 2013 all-star game for his Little League. A day later, Tommy felt a pain in his neck and was fatigued.

At the emergency room, medical workers drew blood and checked his spinal fluid, then sent him home. The following day, the blood tests came back with abnormalities, but somehow the phone number in the hospital records was wrong, so Tommy’s family did not know that he was seriously ill. The hospital put a letter in the mail. It did not matter: Tommy was about to go into shock from sepsis, an out-of-control immune response to a garden-variety infection. Rushed back to the hospital, he needed a ventilator to breathe. He lived 33 more days.

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Rory Staunton died two years ago.

The Stauntons knew the outlines of this ordeal intimately. Two years ago, they lived it with their own son, Rory, 12. Vomiting, feverish and aching, he had gone to a doctor and then the emergency room at NYU Langone Medical Center. He got a bag of fluid, had blood drawn for tests. No one read the results until it was too late. Within days, Rory went into shock, was put on a ventilator, then died.

Both boys, it seemed, had gotten cuts that had become infected while playing ball.

This week, the Stauntons and Mr. Fitzgerald met again, this time in Washington for a forum on sepsis. Among others present who had lost family members to sepsis was Carl Flatley, a retired dentist from Florida. His 23-year-old daughter, Erin, went into septic shock and died after outpatient surgery in 2003. Dr. Flatley founded the Sepsis Alliance as a way to build awareness of sepsis as a medical emergency. At the forum, held on Wednesday and organized by a foundation the Stauntons created in their son’s name, it was clear they were making progress, using the strength of their combined grief to push boulders uphill.

It is likely that all hospitals will soon be required to improve their sepsis care if they are going to be reimbursed by federal health insurance programs: Dr. Patrick Conway, the chief medical officer for the Centers for Medicaid and Medicare Services, said that in a pilot study, 73 hospitals had been able to reduce deaths by sepsis by 10 to 40 percent. He expects the proven techniques to become national standards. “You’re talking about 27,000 to over 100,000 people going home,” Dr. Conway said.

The North Shore-Long Island Jewish Health System hospitals have reduced their sepsis mortality rate by 50 percent, Dr. Martin Doerfler, a vice president with the network, said.

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Tommy FitzgeraldCreditKen Fitzgerald

There are simple and effective therapies for sepsis if doctors and nurses suspect sepsis before its rampage picks up speed. But although it affects more than one million people in the United States annually, half of whom die from it, sepsis until recently got little attention from public health leaders, including the Centers for Disease Control. That agency had no published material on it until the Stauntons hectored the centers’ director, Dr. Thomas R. Frieden, who spoke at the forum.

“Sepsis is not nearly widely enough known,” Dr. Frieden said, promising those present — including Senator Charles E. Schumer — that his agency would push ahead with educating the public and health care workers. He recalled that his own son, as an infant, contracted pneumonia and became septic but was treated in time.

“Between Erin in 2003 and Rory in 2012, three million people died of sepsis,” Mr. Staunton said at the forum. “Carl Flatley had never ever heard of it when his daughter died. We didn’t listen to him. I’d never heard the word.”

Mr. Fitzgerald, the pilot, said he, too, had never heard of sepsis until his son was in its grip. “There are plenty of days when it seems like the only thing you can do is roll up in a ball,” he said. “But that’s not what we’re doing.”

Email: dwyer@nytimes.com; Twitter: @jimdwyernyt

A version of this article appears in print on , on Page A22 of the New York edition with the headline: An Effort to Raise Awareness of Sepsis, Led by Families Touched by It. Order Reprints | Today’s Paper | Subscribe